It's that time again: Shriner's Hospital for Children time. I can tell because my anxiety level is creeping skyward day by day.
I think that feeling must be a strange phenomenon experienced by mothers of "special needs" children -- the waxing and waning of anxiety and emotions. Don't mistake that to mean that this process is not always emotional to a degree, because it certainly is. However, usually after a few days home with a new cast, my nerves settle and my mind slowly stops spinning in circles. Things have a way of returning to "our normal." Then, in the days approaching another casting at Shriner's, I start my mental and emotional downward spiral.
I notice that is gets particularly bad two days prior to Jackson's casting (today). I think that is because that is the day when I realize, time and time again, that my expectations as a patient's caregiver are, once again, not going to be met. Now--I know this is going to happen every time since our first appointment--yet is still jingles my nerves. Those of you who are "planners" will understand me best. Shriner's does not give me Jackson's procedure time until the day prior to it. And, since we must travel to Philadelphia, that translates to the day we leave home. Usually, it is also in the afternoon. When I really think about it, knowing the procedure time does not change anything ... yet the lack of advance notice still drives me absolutely insane!
Today I received an automated voicemail (after 5pm, so I could not call back) telling me that Jackson's procedure was scheduled for 9:30am. Now, I have not spoken to a real person, so I am not sure that is correct. However, if it is correct--that means Jax has been "bumped" into the second surgical slot by a younger child. This sounds immensely selfish--but that makes me angry! Jackson has to be NPO (not eat) after dinner on Tuesday night ... then his casting will not occur until between 9:30-11:30am ... then it takes 3-4 hours in the PACU to trim and pedal his cast. That translates to Jackson not being able to eat between 6pm on Tuesday night until 4pm on Wednesday afternoon. THAT is going to be miserable for everyone! The protective mommy inside me wants to scream at the top of my lungs: "I know that other child is younger, but Jackson is a baby too!!!"
It is this two-days-prior time that I start being really negative about Shriner's Hospital in general. That bottled up feeling that we are merely a "charity case," and that because their services are free of charge, my wishes and opinions don't matter begin to rear their ugly face. We are stuck between a rock and a hard place. Shriner's Hospitals are the only hospitals that offer authentic Mehta casting, so we must go there. However, the operation of the system is not very personal (or professional at times) which makes it very difficult for me to trust their expertise. I start to have that "beggars can't be choosers" feeling which is not pleasant as a mother--especially one educated in the medical field.
Then, there are the countless other pre-casting worries. Jackson has had an occasional deep cough today--will that prevent him from being casted? If not, will that put him at greater risk for anesthesia difficulties? Will the anesthesia team pay attention to me this time when I tell them to adequately tape his ET tube, or will they carelessly let it fall out again and cause another dangerous laryngospasm? How many students will be working on Jackson instead of qualified physicians? Do I even have a right to refuse students since we are at a free teaching hospital? Did we get any correction from cast #2? Are they going to take more needless X-rays this time and expose Jackson to extra radiation? What if he's already been exposed to far too much radiation?
The list is endless.
I just keep having to remind myself that God is in control. That "this too shall pass." I must remember the two previous castings ... and how quickly Jackson was running through the halls of our hotel in his new cast. I have to keep in mind that we aren't given any guarantees on life ... and that a car accident is far more likely to occur than an anesthesia accident. And, as difficult as it always is, I must force myself to be thankful for the blessing of Shriner's Hospital for Children-- that is exists, that they understand authentic Mehta casting, that they are accessible to us, and that they are saving us upwards of $30,000.00. I must focus and pray diligently for the "big picture." That, through God, Jackson's spine can be healed. The rest is just details.